My Story

I know not every visitor to my site will read this page, and that’s OK with me. But for those of you who are curious how I came to know so much about oxalates and the low oxalate diet, I thought a bit of background might be helpful. Warning: I do discuss intensely personal aspects here, so if you are faint of constitution, you may just want to skip this page! Those of you who aren’t squicked out by reading about hormones and bowel issues, however, I heartily recommend reading to the end. It will help you understand just how bumpy my own road has been, and why I am such a fan of the low oxalate diet.

A Perfect Storm

In hindsight, I now realize that I set myself up for a “perfect storm” where my health is concerned. Here’s how it happened:

In the summer of 2009, on the recommendation of my primary care physician, I had a Mirena IUD inserted. I begin with this because it is the date to which I trace a great majority of my symptoms as starting. Thing is, I didn’t realize it at the time. At the time, it seemed like a wonderful idea. The promise of lighter periods and not having to be concerned with pregnancy, while at the same time not having to worry about missing a pill was heavenly.

A couple months later, I lost my job. It couldn’t be helped; the facility at which I worked was being shut down, and my position wasn’t one that needed to be relocated to another facility, so I was out of a job. Not the end of the world, but if you’ll recall the economic recession that was in full swing at the time, you know why this was particularly stressful.

A few months after that, shortly before Christmas, my eldest brother had a debilitating stroke. Since I was still unemployed, I rushed to his side to help in any way I could. Unfortunately, the friends who had taken him to the hospital had waited too long to do so. To this day he remains paralyzed on his left side and requires 24/7 care due to his resultant dementia.

Just a couple months later, my mother (whom I lived with and cared for) died suddenly of a brain hemorrhage. While she had had mini-strokes in the past, this was a very sudden and unexpected event. At 6pm she was eating dinner on the couch as normal. By 2am the next morning she had slipped into a coma from which she would never awaken. While I had long known I would lose her at a younger age than most people lose their parents (my parents were “older” when they had me, and my father had died eight years earlier), it did not ease the loss or make it any simpler to accept.

After my mother’s death, there were several more months of unpleasantness; I was naturally executor of my mother’s estate, and I had also been named as financial guardian for my brother (an honor which I would not wish on my worst enemy). I started my own business since I was having zero luck with the job market, and there were also a thousand other little stresses which continually wore on me – service on my homeowner’s association, unemployment running out…you get the picture.

This Isn’t Just a Tale of Woe

I don’t write this to engender a pity party in my readers. Quite the opposite – my point here is that stress, both emotional and physical, can play a very large role in the overall health of a body, and especially the gut. Read on to see exactly how my symptoms developed, and how I am now winning the war in spite of losing many battles.

For me, the very first inkling that I was in trouble were mood swings. My poor boyfriend suffered from these even more than I did. Thanks to Mirena my periods not only got lighter, but went away entirely. But I can guarantee you that the rest of my cycle did not! I had been on many types of birth control in the past – pill, patch, shot – but I had never had mood swings like this before in my life.

I don’t know if it was the silicone in the Mirena, the particular hormone with which it was impregnated (levonorgestrel), or some other factor which I can’t fathom. All I know is that I have never been the same since having that IUD inserted. Still, it took me nearly a year to figure out that the Mirena was having a serious negative effect on my health and mood (probably because I had so many other things going on in my life at the time). I have since learned that I am nowhere near the only one to be negatively affected by this IUD (one of my favorite sites about this is My Life After Mirena).

Next, my blood pressure rose, suddenly and inexplicably. I hadn’t changed my diet or exercise habits in the past few months or years, but my doctor was very unhappy that I was consistently running 130/90. I did everything I could to lower it without drugs, including the DASH diet and various supplements. I could occasionally bring down my systolic (the top number) but the diastolic didn’t seem to budge no matter what I tried.

Panic attacks and heart palpitations also became a daily part of my life during this period. While they freaked me out, I was fortunate enough to know that they weren’t what they seemed, and that they would eventually pass on their own. In addition, I found a good therapist to help me work through my grief and anxiety. He worked with a doctor who prescribed me Valium, but I also began meditating and doing other techniques in the hopes of being able to get off of it.

I also eventually had my Mirena removed. My doctor didn’t want to do it, because it had been in only a year of its prescribed five years, and also because she had never heard of Mirena causing any of the issues I was having. I had read enough on the internet, though, to be convinced that even if it wasn’t the root of all evil, it couldn’t be helping me one bit. It took over six months for my period to return, though my mood swings were relieved a tad quicker. Still, the hormones had plenty of time to do their of damage to my immune system.

Then I began to have trouble with exercise. While I’ve never been a big fan of working out, it had never actually caused me problems (beyond the expected sore muscles). And with my blood pressure rising, I clearly needed it. One day, however, I was unable to recover after my workout; my pulse rate refused to drop below 100bpm even when lying down, and my blood pressure stayed well into stroke territory for several hours after I stopped working out. Because of the considerable stroke risk in my family, I eventually had some friends take me to the emergency room to get checked out. There I was swiftly (and inaccurately) diagnosed with dehydration. Of course, it didn’t dawn on me at the time how inaccurate that diagnosis was (I had been drinking water ever since the workout; so much so that during my wait time in the ER I urinated at least twice). I was just relieved to hear from an authority that it was something so easily remedied, and went home.

After that, exercise was no longer an option, because my BP and pulse remained more or less permanently elevated. I could keep them “down” to 130/90 and 90bpm by staying in bed all day, but that doesn’t get much done around the house! Doing housework became a challenge, with constant reminders (in the form of dizziness upon standing, among other things) that my cardiovascular system was displeased with me. And going to the grocery store was a full-blown workout that would have me panting by the time I’d walked the length of an aisle!

Something was going to have to change. And it did…

A Ray of Hope

Through my therapist, I learned of a local chiropractor who had recently begun practicing NRT (Nutritional Response Testing). Basically, this is a form of kinesiology designed to test your body’s reaction to various substances, and to give it exactly what it needs when it needs it. It was expensive, but it definitely helped. In addition to the weekly testing and changing of supplements, the doctor also put me on the Healthy For Life diet, which is, at its heart, a low carb diet which insists on a minimum of four ounces of protein at each meal. I slowly began to recover, and I was elated to have found something that worked! My blood pressure never dropped below 130/90, but at least I was feeling human again.

Unfortunately, I’m afraid that the NRT practitioner I was working with was unduly motivated by profit. At my therapist’s suggestion (my therapist was also a client of this NRT practitioner), I brought some supplements with me to be tested against them, and see which ones I actually needed and which were a waste of money. The practitioner, however, dismissed all of the supplements I brought out of hand. And sure enough, when he tested them on me, all of my reactions were negative, indicating I didn’t need them. But did I need more new supplements that the practitioner was selling? Miraculously, yes. His explanation was that they were whole food supplements. Alas, some of the ones from my personal stash were whole food as well, so this argument didn’t sit well with me. Still, what he recommended had worked for me thus far, so I took his advice and stopped taking most of my non-NRT-sanctioned supplements (I stuck with the fish oil and Vitamin D, which had been ordered by my PCP).

In hindsight, I’m pretty sure that the vast majority of the benefits I reaped from working with this practitioner were a result of changing my diet. I quit eating out, and began preparing all my own food at home. I ate organic when I could afford it, and “real food” at the very least. Eating meat and vegetables at breakfast took some getting used to, but my anxiety began to diminish, and overall my health seemed to be improving. This was when I began my run on spinach salads – they were quick and easy to prepare, and I could easily either slice up (or dump, in the case of ground meats) my protein on top, or have it on the side, as my mood dictated. And given that I was always using natural oil-and-vinegar based dressings, what could be healthier?

It got to where I was eating these two and three times a day, while the rest of my life got busier and busier. Alas, most of you who know the oxalate value of spinach can probably see where this story was going – my miraculous recovery eventually reversed itself, and I found myself with constant diarrhea, and a whole host of other seemingly inexplicable issues. My leg muscles would ache for days if I climbed the stairs in my house just three or four times in a day. I grew weaker and needed frequent naps to make it through the day. I had finally discovered that magnesium helped a bit with my heart palpitations, but I was taking the glycinate form which also converts to oxalate once in the body. There were so many things I did wrong, that I can’t blame what happened next on anyone but myself (though at the time I laid much of the blame squarely on my NRT practitioner – read on to see why).

The Last Straw

I eventually did enough googling that I determined oxalates were likely at the root of many of my problems. I cut out the spinach salads, and right around Thanksgiving 2010 I went cold turkey onto the Low Oxalate Diet. I honestly don’t know if I ever got to experience the “honeymoon period” of which so many people speak. I think my system was just so overloaded that I went straight into dumping mode, and didn’t stop until I intentionally stopped it (by eating high oxalate). Which basically means that I went from having diarrhea because my body was trying to get rid of the spinach, to having diarrhea because my body was dumping oxalates. Not much fun, and not very healthy, but I wanted those toxins out of my body NOW! The discomfort I was experiencing (from things like muscle pain, chronic histamine reactions and rampant insomnia) was secondary to the healing I was trying to accomplish (not the most wise approach, to be sure).

Though I had told my doctor what I discovered, she was quite skeptical that simply eating spinach could do all these things. She did, however, find that my vitamin D was very low, and prescribed for me some high-dose vitamin D pills. These helped a bit, especially with my insomnia, but when I went back to my daily 2000IU over-the-counter pills, I seemed to go back to getting no benefit. Of course we were by then well into winter (and I live above latitude 35N), so sunning myself did no good.

Since the prescription vitamin D I was taking was 50,000IU, and the OTC vitamin D I had on hand were only 1,000IU each, I saw now harm in raising my dose a bit to try to build my stores in the liver. Alas, the prescription D was vitamin D2, a different form from the vitamin D3 contained in the OTC pills. And in my body, D3 apparently causes constipation, even at relatively low doses like 5-10,000 IU. Although at the time I just thought it had cured my diarrhea – a wondrous development all by itself! Unfortunately, after just a couple of days of no bowel movements, I became so weak I could hardly stand, and spent the day with the worst headache of my life. I eventually dragged myself to the ER because I truly did not know what was happening to me.

Turns out my constipation had caused me to become dangerously low in potassium. At the time, it didn’t dawn on me that the reason I wasn’t absorbing potassium was because food was no longer moving through my intestines. I thought it was entirely due to the fact that I had stopped taking my potassium supplements on the order of my NRT practitioner. Over time, though, I realized that constipation (due to vitamin D3) was my underlying problem, and remedied easily enough…as long as I didn’t need vitamin D. Which I did. Talk about a catch-22! Still, with patience (and sunning myself in the spring), I eventually got my mojo back and started really seeing the benefits of the low oxalate diet.

Lessons Learned

I have had plenty of other challenges, even since the end of the story above (which fell around April or June of 2011). Among them a run-in with high-dose probiotics, more problems with constipation (yes, even vitamin D gained through sun exposure can cause this!), and many sleepless nights due to either dumping or inadequate vitamin B6 intake. But overall, the lessons I learned going through all of the above have served me well:

  • Never let stress become a driving force in your life – the toll it takes is too great.
  • What you eat can have a dramatic impact on how you feel. I totally understand why some autistic children self-harm or act out before their diets are cleaned up, because I did exactly the same thing, just in a “more adult” manner.
  • Never be cavalier about what you put on and in your body – it absorbs more than you think!
  • Just because something is good in moderation, doesn’t mean more will be better – start low and slow with all supplements.
  • Patience isn’t just a virtue – it’s indispensable.
  • Too many doctors, even the “good ones,” who are open-minded about alternative therapies, are blinded by the propaganda of the pharmaceutical industry.

And most importantly:

There is NO SUBSTITUTE for listening to your body!

Now I follow a relatively low oxalate diet, with once-monthly cheat days that help me keep my sanity even when my hormones are raging (Mirena or no, I still have rough periods!). I do my best to change only one aspect of my diet or supplementation routine at a time, and I always make sure to start with a small dose of any new supplement, in order to ensure it doesn’t upset things too much. Raising my supplement intake is an incremental task. While this can be frustrating, it has definitely helped me to know which supplements are doing what, and which cause negative repercussions.

And I’ve done similar testing with new foods over the months. I’ve figured out that sugar and grain can produce anxiety and/or rage, and that cow dairy causes me constipation and phlegminess. Am I celiac, or do I have IgG allergies to these substances? I don’t know, and I can’t afford the tests to find out. All I know is it’s much easier just to avoid them, than to worry about what I’m missing out on food-wise. I still have my cheat days, if there’s a new recipe or restaurant dish that I simply can’t live without trying.

In addition, I’m someone who has suffered with chronic, bad headaches ever since hitting puberty. However, since the low-potassium headache that sent me to the ER, I haven’t had a single headache or menstrual cramp that couldn’t be cured by taking extra calcium. Is this the only thing that caused my headaches in the past? I don’t know, but it’s possible. What I do know is that I’d much rather take a calcium supplement for a headache than an Advil or Tylenol!

Oh, and my blood pressure? I still struggle with that a bit, but I eventually linked it to low sodium. Yeah, you read that right – LOW sodium. Apparently the kidney has to sense sufficient sodium in the blood, or else it uses the renin-angiotensin system and raises blood pressure to ensure adequate blood flow. So the DASH diet was the exact WRONG thing to be doing, in my case!

It’s truly amazing what you can discover about how foods and supplements affect you if you take the time to make careful notes and truly pay attention to what your body is telling you. For example, look at what you’ve done differently as soon as you develop diarrhea, instead of waiting until you’ve had it for two weeks! When I slow down, I think that some of these things are just common sense. But when we’re all moving full-tilt through our lives, it’s so much easier (and far more socially acceptable) to “power through” and ignore symptoms until they’ve caused irreparable harm. I only wish someone had taught me at a much younger age about oxalates; that would have cut the painful length of my story almost in half!

These are just a few of the reasons I’m so motivated to learn and share as much as I can about oxalates, as well as all the various tangential topics to which they have led me – nutrition, autism, chelation, and much, much more. It hasn’t always been a pleasant journey, but I have definitely found much hope and healing along the way. I hope my site helps you to do the same!

17 Responses to My Story

  1. Marie Clowes says:

    Ah! Mirena coil. Had it removed this year after 10 years! I had deliberately left it in longer to help me through the menopause then of course fatigue meant that I just didn’t bother. I only eventually got it removed when my sister found out online of its implication in many of my symptoms. Thanks
    MC xx

    • admin says:

      Hi Marie!

      Yeah, I still don’t know how much of a role the Mirena played, and probably never will. But you can bet I’m done monkeying with my hormones (vitamin D notwithstanding, heh). The thing that gets me about Mirena in particular is that I probably shouldn’t ever have had it, having never had kids. But as Proud Momma points out, the almighty dollar (or in your case, pound :) ) always seems to win, and so Mirena is now “approved” for just about anyone with a uterus. Unbelievable!

      -Michelle

    • Emma says:

      Is this merena same as the Copper 7 iud?

      • Michelle Fields says:

        Emma,

        No, the Mirena is a plastic and silicone IUD impregnated with synthetic hormones to help prevent pregnancy.

        Hope this clarifies!
        Michelle

  2. Lena says:

    Funny you mentioned Mirena, I thought it would be great to not have to worry about another baby, since I was 42 when I had my daughter. But soon after it was inserted, by normal weight daughter, whom I was nursing, became very chubby, and I “gained weight” just in my pelvic area. Looking back, I know now that it was inflammation. In addition to the body swelling it caused, I definitely noticed a lack of normal drive, and flat affect. It took months after the removal (I only was able to keep it in for 6 weeks due to the bleeding) for my pelvis to start to recover.

  3. jackie says:

    I just read your story after looking for info on the affects of oxalates in the body. I have been suffering with severe muscle pain for two years now. I couldn’t help but notice many of your symptoms of fluctuating bloop pressure, stamina and anxiety. I was wondering if you had ever had your cortisol, adrenal and thyroid levels tested. ?….Some of the things you described i had been experiencing and were addressed by treating the result of high antibodies attacking my thyroid. My levels were within high normals for years. Was a terrible stress on my body. I still have a lot of muscle pain and am looking forward to trying the LOD. Just wondered if you had ever been seen by an endocrinologist because the mirena may have upset your hormones (clue being your absent periods). Thanks for your story. Jackie

    • admin says:

      Hi Jackie,

      I did have all these things tested, and most of them came back normal. My TSH was elevated once, but I was able to correct that from switching from a very low carb diet to a low-moderate carb diet. The adrenals were tested after my endocrinologist put me on hydrocortisone for a month, so I do question whether or not those test results were valid, but since I’m now muddling along pretty well with no meds, I’ve never gone back for another round of testing. The absent periods were 100% due to the Mirena; they came back a few months after I finally wised up and had the Mirena removed.

      I’m sorry it took you so long to find your autoimmune thyroid issue. It’s terrible the way these things are so often just ignored when they’re borderline. I know the LOD has helped a lot of folks with thyroid and adrenal issues. I hope it helps with your muscle pain and quality of life!

      -Michelle

  4. Manuel Ferreira says:

    It was time well spent to learn about your experience. You are thoughtful and precise and compassionate. Thank you.

  5. Charlene says:

    Thank you for sharing your journey with health. I have
    Hashimotos Thyroiditis and Lichen Sclerosus and, though I have never had the Mirena, I can see some of my story within
    yours and it’s helpful to see what did and didn’t work for you. I’ve just noticed recently that flare ups in my lichens always occur after eating a fair amount of spinach, swiss chard or sweet potatoes and if it weren’t for a friend that had to go on a low oxalate diet due to kidney stones I wouldn’t have known about the oxalate connection! I’m looking forward to learning more about managing oxalates and appreciate your website as a resource.

    Blessings on your health journey!

    Charlene

  6. Crisel says:

    Hi! Thank you for telling us about your case and tips. I and my husband have oxalates problems since we stared a diet to lose weight with spinash salads. What a mistake! We are dumping now. You did mentioned about yeast infections. Only get better in the end of dumping process? I’ve been treat without great results for now. Any tips about that? Cheers.

    • admin says:

      Hi Crisel,

      Sounds like you, like me, learned the hard way about the evils of spinach! As for what I did for my yeast issues, high dose biotin has been the only thing that has kept them at bay permanently (by permanently, I mean as long as I take it, the yeast stays in check).

      I talk at length in this two-part blog post about why I take high doses of supplements (biotin included). While only your health care practitioner can tell you whether high-dose biotin is safe and good for you, I can say it has done wonders for me!

      -Michelle

  7. Tammy says:

    I was reading your symptoms of dumping and wanted to ask, when you talk about histamine response does 5 hat include hives and wheezing? I developed food and med allergies as an adult, but I have “allergic” reactions even when I dint come in contact with these things, my doctor calls them idiopathic reactions. Could this be dumping? I have them every 6 months regardless what I do.

    • Michelle Fields says:

      Hi Tammy,

      I never had any hives to speak of, but I did have wheezeing (which my doc decided was seasonal asthma, rather than idiopathic). I suppose what you describe could be dumping, but as far as I know there’s no way to say for sure. If it were me, and I reliably got these symptoms whenever I saw other known symptoms of dumping (like sandy stools and whatnot), then I might consider it a safe bet. But otherwise, I’d keep searching for another underlying cause.

      Hope this helps!
      Michelle

  8. Cathy says:

    How did you get your potassium levels back up? I know my potassium is low but if it isn’t low enough to put you in the hospital you can’t get a prescription for it. I don’t want to end up in the emergency room. What did you do?

    • Michelle Fields says:

      Hi Cathy!

      Honestly, I no longer remember all o the things that I did. I remember eating a lot of bananas and avocados, since they’re rich sources of potassium and relatively reasonable, oxalate-wise. Eventually, I no longer had a problem with potassium though. Honestly, I think it was the process of addressing some underlying constipation that helped my potassium status the most, but as I said, memory is foggy at this point (not to mention I was trying so many things at once back then!).

      Sorry I can’t be more specific,
      Michelle

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